Mrs C is a widow who lives on her own and has a progressive life limiting condition. Her husband died three years ago and she has three children who don’t live close by. She has long standing Chronic Obstructive Pulmonary Disease (COPD) but over the past year this has become increasingly severe and she has needed two hospital admissions. Then two months ago she was diagnosed with lung cancer with secondaries to her bone and liver.
This is how a comprehensive approach to personalised care might be seen through Mrs C’s eyes.
Shared decision making:
There are many opportunities and critical points for shared decision making:
- Deciding whether or not to accept palliative treatment for her lung cancer
- Deciding what level of treatment/intervention she would wish in the event of another exacerbation of COPD – including hospital admission – discussion about the thresholds for these decisions, e.g. severity of breathlessness, availability of carers, etc.
- Deciding whether or not to record her wishes about future care at this stage, including decisions about cardiopulmonary resuscitation, oral vs intravenous antibiotics, etc.
- Decisions about what sorts of interventions she would prefer for symptom management – what kind of drugs, in what formulation, and what kind of non-drug measures
Personalised care and support planning:
There was a holistic assessment of her physical, psychological, emotional, social and spiritual needs and most importantly, several discussions about what matters most to her including:
- Discussion about how this plays into a personalised care and support plan that she would like – discussion about when and how a review is triggered
- Discussions about the level of personal care she needs at the moment – she decided that she only needs morning carers for the moment
- Summarising decisions arising from the above discussions into a format that can be shared with others and used to guide delivery of care, treatment and support
- Planning for her personal welfare – making a will, discussing funeral arrangements with her children etc.
- Ensuring that key information about her plan is shared with those who might need it – e.g. her GP and community nurse, hospital staff, ambulance services, NHS111, GP out of hours services, her family and/or whoever is close to her locally, any specialist services involved (e.g. respiratory, oncology, palliative care, etc.)
Mrs C was made aware of choices available to her in terms of choice of provider and services within her area. She was content with current clinical arrangements but was not satisfied with the quality of personal carers that she has coming to her each morning. She ended up taking up a personal health budget which will enable her to exercise greater choice and control over this aspect of her life
Social prescribing and community-based support:
Mrs C was referred by her GP for social prescribing scheme and consequently, she:
- goes on a weekly health walk locally – and meets new people
- has a volunteer who helps with her shopping once a week
- attends a community centre for a weekly lunch club
- is being taught how to use an ipad so that she can skype her family regularly – they can see her through skype and are more reassured, as she tends to get a bit breathless on the phone – her grandchildren are also more likely to communicate by skype than pick up the phone to her
Supported self management:
Her Patient Activation Measure was initially recorded at Level 2 and then she started health coaching via her GP surgery. This helped her manage her symptoms (breathlessness, pain and anxiety) more effectively and as a result she now feels confident enough to join the activities offered through social prescribing (see above). This also resulted in her PAM level increasing after 3 months.
Personal health budget:
Mrs C was offered a personal health budget (PHB) to help with the daily management of her ongoing health and care needs. She didn’t want a daily agency carer and instead uses her PHB to pay her neighbour whom she knows well. Her neighbour calls in each morning and Mrs C feels confident enough to wash and dress herself knowing that her neighbour is in the house. The neighbour is also on standby in case she’s needed. As Mrs C’s disease progresses and she becomes more dependent, her PHB can be increased following a review of her personalised care and support plan, and could enable her to pay another neighbour to pop in in the evenings as well.